Get your free Brainy Bag
Our Brainy Bag is full of useful resources to help you and your child better understand brain tumours - as well as age-appropriate treats!Order your free pack
Proton beam therapy is a specialised form of radiotherapy that involves directing a beam of protons (energised sub-atomic particles) specifically at the tumour.
Proton Beam Therapy (PBT) is a type of radiotherapy that uses beams of 'protons' (energised particles), instead of beams of X-rays ('photons'), that are used in conventional radiotherapy. It is more targeted than conventional radiotherapy so does less damage to the healthy tissue around the tumour and in the rest of the brain.
A machine (called a cyclotron or particle accelerator) speeds up the protons causing them to gain energy. Once a high level of energy is reached the protons are then beamed out of the machine and guided by magnets towards the tumour.
Protons accurately release most of their cell-killing energy at a particular depth in tissue. This depth can be varied by the medical team who programme the PBT machine. The beam of protons can be set up to stop once it has 'hit' the tumour cells (and travelled for a safe margin past the tumour to capture any tumour cells beyond the visible edge of the tumour).
This means that proton beam therapy destroys the tumour cells whilst not affecting so many of the surrounding cells. In particular, PBT delivers very little radiotherapy in a path through the rest of the brain on the other side of the tumour, unlike other high energy beams (X-rays) used in conventional radiotherapy.
However, the X-rays do also release some of their energy before they reach the tumour, and continue to release some after they have passed through the tumour and continue on through the brain to exit on the other side of the head.
This causes some damage to the normal, healthy cells in the path of the radiotherapy, but normal brain cells are more able to repair themselves than tumour cells.
This initial damage to the normal cells, however, can cause side-effects in the short-term. Some of the damage may be unrepairable, leading to long-term effects.
Similarly, in PBT the beams of protons are carefully planned to target most of their energy within the tumour.
However, by altering the beam energy, the beam can be designed so that the protons stop and release most of their energy accurately at a particular depth in the brain i.e. where the tumour is situated.
As proton beam therapy is highly targeted towards the tumour, it means it is often possible to treat areas closer to very sensitive structures such as the spinal cord or optic nerve.
The beam is usually set up to travel a little way past the tumour to make sure it gets any tumour cells beyond the edge of the tumour that can't be seen.
This means that fewer healthy cells nearby receive a dose of radiation. This is particularly important in children, whose brains are still developing.
The reduced damage to surrounding healthy tissue means the tumour can be given a higher dose of radiation.
Whether your child/you can have PBT depends on many factors, including:
PBT is not suitable for all types of brain tumour. It works best for smaller tumours and those where the edges are clearly defined.
It is also useful where the tumour is close to very important structures like the spinal cord or optic nerve, or when it is important to reduce the damage caused to surrounding normal tissue as much as possible e.g. brain tumours in young children whose brains are still developing.
There is a nationally approved list of tumour types that are suitable for referral.
With regards to brain tumours, these include:
Children, teenagers and young adults:
Though not on the approved list, PBT has sometimes been used to treat medulloblastomas in children. However, diagnosis alone is not enough. PBT will only be given if it is thought it will give a significant advantage over conventional radiotherapy.
Timing of when the radiotherapy needs to be given in relation to other treatments, such as chemotherapy. (It is most important that PBT seamlessly links with surgery and chemotherapy. Disruption in the pathway, and the resulting delays, can lead to less intensive therapy and a reduction in tumour control. This could counteract any longer term benefits. This is particularly important in the treatment of high grade, 'malignant' brain tumours, such as medulloblastoma)
It is also important to realise that:
If the Clinical Oncologist feels that PBT may be suitable for you/ your child, they will, with your agreement, refer your/your child's case to the Proton Clinical Reference Panel (PCRP) of the UK Proton Overseas Programme for consideration. This is the same for patients from England, Wales, Scotland and Northern Ireland.
There is a strict set of criteria that a patient must fulfil for a referral for PBT to be made. Funding for treatment will not be approved outside these strict criteria. It is also unlikely that the treatment will be successful if these criteria are not filled.
New PBT centres are being built in the UK. As of January 2019 there is an NHS centre in Manchester and a private centre in Newport. These have recently opened so are gradually increasing their capacity. As a result, not all brain tumours suitable for treatment with PBT can be treated in the UK.
Unfortunately, other current UK PBT machines are low energy machines and cannot deliver the protons at a high enough energy to reach the depth in the body where brain tumours are situated.
The NHS will refer appropriate cases to approved treatment centres in Europe (Germany or Switzerland) or the USA. Children tend to go to Essen in Germany.
There are other (private) centres overseas, but people/parents should be aware that these can be expensive, may not have sufficiently trained staff and often don’t offer other treatments, such as chemotherapy, which may be required alongside the PBT. The lack of these additional treatments could have an effect on the overall effectiveness of the treatment.
The NHS is planning to open another PBT centre suitable for treating brain tumours at UCLH (University College London Hospital) in London, which is expected to treat patients by 2020 (although this date may be subject to change).
Several private companies have also announced they plan to open facilities in Northumberland, Reading and Liverpool. These are not expected to be able to deliver PBT until later in 2019 (again, these dates may be subject to change).
It is also not certain:
Not if you are approved for treatment by the PCRP. The NHS will cover the cost of PBT treatment at approved treatment centres, whether in the UK or in the USA and Switzerland. If you are sent abroad, it will also fund economy travel and approved accommodation for the patient and one to two carer(s)/parent(s) accompanying them.
The accommodation has to be approved by the treatment centre. The number of carers/parents funded will depend on the age of the patient. If aged over 16 years, only one carer/parent will be funded, except in exceptional circumstances.
The NHS will NOT fund any meals or refreshments, nor any upgrades to travel or accommodation.
If you live in England, NHS England pays for treatment and your travel and accommodation costs.
If you live in Scotland, NHS England will pay for treatment, plus your travel and accommodation costs, then claim the money back from NHS Scotland.
If you live in Wales or Northern Ireland, your consultant will contact your local health board/trust directly about funding for treatment, travel and accommodation costs.
If you need help with associated essential costs not covered by the NHS, contact our Information and Support Line about sources of grants and other financial help that may be available. Additionally, your local neuro-oncology centre may have access to charitable funding.
The procedure for giving PBT is very similar to conventional radiotherapy.
There will be several planning appointments at the treatment centre before you/your child starts PBT. These include:
After these appointments there is usually a two week gap whilst
the treatment plan is calculated and prepared specifically for
You will then usually be able to go straight home.
The treatment generally only lasts one minute, but with the positioning and adjustments, the session is likely to be about 20 minutes.
It is usually given daily (Monday to Friday) for up to 5-7 weeks. This depends on your child's/your tumour type and grade.
You will need to be away from home for at least 8 – 10 weeks.
No, PBT is usually given as an outpatient treatment, which means you do not need to stay in hospital.
Occasionally, you /your child may need to stay in hospital. For example, if you/your child have side-effects that need inpatient care, or if you/your child need inpatient chemotherapy alongside the PBT.
It is worth bearing in mind, however, that brain tumour patients are usually referred to Switzerland or the USA for PBT, which can mean substantial time away from home.
These are likely to be fewer than with conventional radiotherapy, but how your child/you feel will depend on the size of the dose of PBT you had and whether you are having any other treatment, such as chemotherapy.
Find out more about the side-effects of proton beam therapy.
Find out more about the side-effects of proton beam therapy.
Although your child’s treatment plan will be carefully developed by healthcare professionals to be as effective as possible while having the fewest risks or side-effects, sometimes proton beam therapy may not work. This can be worrying, but just because one treatment hasn’t worked, it doesn’t mean others won’t.
Find out more about what happens when treatment doesn’t work.
If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
0808 800 0004 (free from landlines and mobiles)
Phone lines open Mon-Fri, 09:00-17:00
You can also join our active online community on Facebook - find out more about our groups.